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sick, scared, and need of some hope

hpsquad's picture
Posts: 7
Joined: Nov 2009

I just completed my firnst chemo of folfox with 5fu pump. The nausea, exhaustion, and pain has been overwhelming. The posts have enlightened me to what to expect, but I hoped that when they disconnected me, that I would feel better. This is the first of 12 and I worry about making it through. Any help or encouragement would be appreciated.

Buzzard's picture
Posts: 3073
Joined: Aug 2008

What are you taking for nausea ? Are you constipated or running off at the bowel? Jaw spasms etc..folfox is a bear to do but it will kill the crap out of cancer cells..It will however have some nasty side effects too. But you will make it after the routine kicks in with it you'll know what to do..Now, tell us what you are taking as preventative meds and what your buggest problems are and we'll go from there...I will go back and find the thread on what to expect with folfox and bring it in this thread and paste it here for you....Love and Hope, Buzzard

papajedi's picture
Posts: 110
Joined: Oct 2009

I had the same reaction and I was in great shape ect. It gets easier as the unknown of Folfox is met :) I had a hard time first treatment because I was exhausted after surgery and not mentally prepared. Like buzzard said are you taking anything for nausea? If so take it one day in advance and hydrate really well, hang in there it does get manageable :) XOXO

hpsquad's picture
Posts: 7
Joined: Nov 2009

I finished the 5fu on Sunday and the symptoms from all of the drugs appear to be not as intense, except the nausea. You asked about the drugs. Does it make a big difference if it's generic or regular? They prescribed Zofran, Compazine, and Atavan for the night. Unfortunately, I do not always remember to take them until the nausea is active. It seems each day I wake up a little stronger and almost normal but by the afternoon, I'm ready to crawl back in bed.
I've always worked full time, serve on a few boards of organizations I love, and do alot of volunteer work. Right before the surgery, I decided it was time to focus on my health and to take a break from all the extra work. I am not a good patient nor am I very patient.
I hae read that you have been through this. Not being a whiz on the site, is there somewhere I can read more about your experience?
I hate to repeat myself but this all really sucks. BUT... I have found my priorities have changed. Before, I would never make time to call or spend time with friends or family. Now I am on the phone constantly and am making plans to meet people, if only to catch up.
ANyway... I'm really looking forward to hearing from you.


dianetavegia's picture
Posts: 1953
Joined: Mar 2009

There's a 22 year old boy on a teeny site I visit that has had your type cancer. His was dx's when he was 18 and was also Stage IV. He's gone into remission 3 or 4 times now and seems to be doing well. His moniker is Irish Warrior and he's from Canada.

FOLFOX gets better, gets worse. I think the unknown makes the first few treatments seem bad.

Give us more info and those who had that specific side effect can help.

Posts: 810
Joined: Nov 2009

I was on the folfox with the pump every 2 weeks for 9 rounds. I found that when they disconnected me I felt like crap for a couple days and then began to feel better. Alot of it is in your mind, I firmly beleive that. I told myself that although I had cancer and this was poison, it is going to make me live longer. Just hang in there. My first 2 treatments I took someone with me and then finally just started going by myself. I used the time suring my infusion to read a book, nap or just relax.
Even with the pump, I began to continue to try an live my life normally, I went out to lunch ad whatever I could do to feel normal.
Just get the rest you need and try and focus on the end result. LIFE!

Steve Z's picture
Steve Z
Posts: 51
Joined: Sep 2009

Get ahead of the nausea as much as you can with your meds. Talk to your Onc about what your experiencing, there may be something they can do during you treatment. I'm between treatment 5 and 6, I've found walking or running on a treadmill after disconnect helped me come out of it. Stay out of the cold, breathing cold air makes me nausous. I wear a fleece neck roll and cover my mouth. I think of it like a hangover that lasts a couple of days. You'll wake up one morning and feel better.

Anticipate and appreciate that better days are coming, but prepare yourself and your Onc for the next treatment. Hang in there!

just4Brooks's picture
Posts: 988
Joined: Jun 2009

This is going to be the hardest fight you had in your life. I just got finished with my chemo treatments about 3 weeks ago and I know it's hard. I picked up a hobbie to do on the "Down Days" I paint rocks and it sure helped to take my mine away from thinking how bad I felt. Damm I got good at painting rocks!!! Also keep comming to this board. These guys sure helped me through this and are truly the best... You'll be okay, Keep up the fight!! My medicinal marijuana sure helps on them "sicker then a dog" days. So check into that too

Live is funny sometimes

PhillieG's picture
Posts: 4912
Joined: May 2005

let us know what symptoms you are dealing with. That's the best way we can offer concrete help. For nausea there are the "doctor prescribed" medications and if you are fortunate to be in one of the soon to be 14 states that have come to their senses as far as medicinal marijuana goes, that works the best out of the many things that I have tried that come in pill form.
The chemo is not easy but it can be done and you can do it.

Posts: 881
Joined: Feb 2007

You're right. Folfox ain't no joke. BUT, it will get better. Let us know what your preventative meds are and what your routine is. We can give advice and you will find what works for you. I did 9 rounds and it was tough, but not undoable. Let Buzz know everything, because he has been around the block with this.
Stay encouraged. We are with you.

lizzydavis's picture
Posts: 893
Joined: May 2009

Some things to think about which might help:

Staying hydrated during chemo helps. You can ask the nurse to give you a small cup of ice chips before each chemo treatment. Keeping ice in your mouth during the treatment and drinking water helps. This slows the circulation of blood, and the chemicals, to the membranes of the mouth and throat. Really worked wonders.

I was a little nauseated with chemo (never vomited). I bought ginger root pills at Wal-Mart and they are highly recommended. They are given to pregnant women too for nausea. I took them every morning. I bought some lemon sour candy too. That helped with nausea. We are all different and will react differently.

--Ask for nausea, pain, and anxiety meds to have at home – Ativan was the one which worked for me. I was told to take the pill as soon as I began to have slight queasiness. If I waited until I was very queasy, it would be too late. I followed their advice and it worked.

--Take some crackers (cheese squares or saltines)and water along (to chemo) with magazines to help the time pass or you can sleep too.

--Ask for a 24-hour call number if there is any problem at home.

The Oncology nurses are very helpful and will give you lots of information and answer any questions you have. My first treatment went fine. I did have some nausea at home and the pills helped. I did sleep and that helped also.

Ask about taking Alpha-Lipoic Acid as a preventive for neuropathy. You can buy it at Wal-Mart. I was involved in a clinical trial. They gave me the alpha-lipoic acid and I took 2 tablets 3 times a day. I do believe it helped because I had very little neuropathy.

YOU CAN DO THIS! We have and it will become manageable. WE ARE HERE FOR YOU!

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